Nothing is working any more for back pain & pinched nerve

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hisfaithful1
Regular Member


Date Joined May 2010
Total Posts : 167
   Posted 6/23/2010 8:13 AM (GMT -7)   
It is heart breaking watching my husband Jim in constant pain. I am desperate for any suggestions, please.
 
He has degenerative disk disease, and a pinched nerve is so bad even on Lyrica, and oxycodone every 6 hrs. and methadone 3 a day. They used to help some, now it's like he took tylenol or something, it's just not touching the pain at all. The amount of lyrica that did help the pinched nerve made him sleep all day, so he finally had to cut it down by half. It still makes him pretty sleepy in the day, and the nerve pain is worse. He is also suffering with almost constant fatigue.
  
He is supposed to have a TLIF, transforminal interbody fusion, but the soonest they said it would be is September. Thats our good ole VA for ya! If anyone here has had this done please share how it turned out with you. We are sooo hoping this will at least give him some relief from the pinched nerve, he says if it will do that than it will be worth it.
 
I am desperate to find anything that will help him. Any advice would be much appreciated.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/23/2010 4:02 PM (GMT -7)   
Hi, Hisfaithful1,
Welcome to the chronic pain form of Healing Well. I'm sorry about what you and your husband (yes, it's both of you, although he suffers with the physical aspects) are going through.

Many of us here have had surgery, although my approach was a PLIF, double level (L4-S1). When I read about transforaminal approaches, they sounded interesting but the skill of the doctor is extremely important. Of course, that's true in all cases, but the doctor in my region (at a major medical center) who was doing them only took cases where there was not severe damage, which may be the case with your husband.

One thing I would recommend is getting a second opinion for any major surgery like this, although maybe you've already done that. You certainly have time between now and September. And the VA isn't the only place that has waiting lists; neurosurgeons are in demand and there aren't a lot of them compared to other specialties, so getting surgery can take a few weeks or more.

Unfortunately, my surgery didn't help any of my symptoms, but it's important for you to remember that the people who have had successful surgeries probably aren't posting here, but are off living their lives.

Is your husband seeing a pain management specialist at the VA or just his primary care doc? At least having an evaluation by a pain management doc could help determine if there are any other strategies or medications that could help him until he has surgery. I think (but I'm not sure) that the VA usually has primary care docs doing the pain meds. prescribing, but they may be able to consult with a specialist. Sometimes there are even agreements with local hospitals or specialists that allow a veteran to be seen there and have the VA cover it.

Don't know if any of this helps, but hopefully others will be along to add more.

Again, welcome. And invite your husband to post, too.

PaLady

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/23/2010 6:40 PM (GMT -7)   
A friend of mine just had disc surgery-though not the one you mention for her ddd.
She can't believe the difference. The recovery took longer then anticipated but she is now in significantly less pain and has more mobility (her arms and hands had been very severly affected by the preasure on her spine from the deteriorating disks).
She is very thankful that she had the surgery. I hope your husband gets the same results.

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 6/23/2010 8:33 PM (GMT -7)   
Hi and I too would like to welcome you to Healing Well!!

I'm so sorry this is disrupting your life and to watch your husband in pain is unbelievably painful for you. Before anything else, please do take care of yourself! As a caregiver we often put our basic needs aside for our loved ones. It's natural especially for us women to do that as we seem to be born nurturers. But if you are over tired, stressed and a wreck then you are no help to him. Take time to do something just for you...go to lunch with a friend, take yourself off the the library or whatever pleases you. Take long soothing soaks in the tub, have some special coffee and 2 pieces of Dove chocolate with it. ;-) Also you might consider a psychologist just to handle the changes in your life. And for hubby there are pain counselors who can make a huge difference with managing it.

For hubby...first off give him a gentle hug from me/us and invite him to join in also. We are a very caring and understanding bunch here. Everyone understands your pain since we all live with it on a daily basis. Hopefully his treatment will alleviate his but that's a huge wait.

I agree with PaLady about getting another opinion. Even with military care you are entitled. Can you possibly go to a different hospital for treatment...one that's much farther away? It may be worth the drive if you can get it done sooner.

Reach out in your local community too as there are likely services you can tap into. People can come help with household work since hubby likely isn't up to it and I'm sure you have your hands full. Ask folks at your local library where resources are. They seem to have all of the inside knowledge of what's in your area. I live in a small community and the gals there know everything!

And lastly, I would think that since your hubby is scheduled for his treatment in Sept. that they would have no qualms about raising his pain medication dosage. If the Lyrica isn't providing any benefit but sedation then I'd consider stopping it and opting for something like Fentynal Patches for better pain management. Since there is an end in sight they should prescribe better pain medication without worrying. Below is a link to those patches in case you've never heard of them. Often they are much better for the most severe pain.

Warm hugs to you!
Chutz

www.webmd.com/pain-management/fentanyl

www.fda.gov/Drugs/DrugSafety/PublicHealthAdvisories/ucm048721.htm

Statement from this link:

Why It Is Used

Fentanyl is used to manage moderate to severe pain, usually in people who have chronic pain. Fentanyl is often used when your other pain medicines no longer work.
How Well It Works

For people with cancer who are already on opioid pain medicine such as morphine or oxycodone, fentanyl works well for treatment of cancer pain.
If you're going through hell, keep going.

Winston Churchill

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


hisfaithful1
Regular Member


Date Joined May 2010
Total Posts : 167
   Posted 6/24/2010 7:46 AM (GMT -7)   
Thanks so much for replying everyone, and the warm welcome. 
 
   I told Jim about about writing to you all here, and asked him to read your responses when he feels better. As you all may already know, mornings are the worst.   Heres a little history..  he has been on just about everything thats out there, even morphine, and surprisingly it for what ever reason did not work for him. His regular VA doctor sent him to a pain specialist over a year ago, he's the one who put Jim on Lyrica. He tried everything they had to offer, all the different types of injections in the spine, we were so disapointed when nothing worked there. So the pain doc said surgery is the only option left.
 His regular MD just put him on the Fentynal patches, just got it yesterday, of course they are starting out with the lowest dose of 25 mgs.  We are hoping and praying they will give him some relief. They also upped his percocet to 10 mgs every 6 hrs, (and took him off the Methadone) which hasn't helped any so far. I appreciate that Jim has the VA, but if he needs stronger doses, it always takes soo long, as everything has to be approved, then they mail the meds. It can be so frustrating! 
 
The surgery is scheduled at the Va hospital in Baltimore, we went there and spoke to the Neurosurgeon and he thinks Jim is a good candidate for this surgery, mainly for relieving the pinched nerve pain. Jim said if it will only do that it will be worth it!  
 
 I'll ask Jim about getting a second opinion. I agree it would be a smart thing to do.   Honestly I didn't think the VA would allow that,  so we will check into it.   
 
 Thank you PAlady, and Chutz for the good advice.
Thanks also sjkly for the well wishes, and I'm happy for your friend that had success with her surgery.
 
Chutz I agree , I know the caregiver has their own struggles as well. As for me I had always been very healthy, then just recently found out I have Fibromyalgia, plus bad osteoarthrtis in hips, knees, at least one shoulder, and now it feels like it could be in both hands too. Hips are the worst, doctor said I will for sure ave to have a hip replacemment sometime, I'm 54 and she said that's too young, but if I was 10 years older they would want to do it right away!  Plus 2 bulged disks in my back. And the fatigue from the fibro is a constant. I am grateful that tramadol, and Flexeril are helping with some of the pain.
 
I have to tell you, I was blessed to meet and mary Jim only 3 and a half years ago. We are both supportive of one another, and have our faith which is more important than anything. If there are any other christians here, would you please say a prayer for us? Especially for Jim to be given some kind of relief, as his pain is so bad, and never stops. Our faith is really what helps get us through each day.
 
Now I have to try to get to the store and buy some dove chocolates!! ( fellow chocolate lover here chutz) hmmmm yes, good coffee and chocolates is a great combo. When I used to make fudge, I had to have a big piece of it every morning with my coffee. Bad i know, it's a good thing I only make it during the holidays now or I would be in trouble!
 
Sorry if I went on for so long, though it does help to vent, and especially to people who really understand.
 
Take care, and thanks again.
 
Debbie   
 
 
 
 
 
 
 
 
 
 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/24/2010 9:48 AM (GMT -7)   
Hi, Debbie,
Feel free to vent anytime here. That's what this place is great for. There's also a part of the forum for fibro you may want to post to. You can do that by using the Quick Jump menu at the top of the page. And you can still post here, so don't worry about posting in both places.

You said none of the injections helped your husband. Usually - and I say usually because nothing's 100% when it comes to these complicated spines of ours - the doctors try to at least isolate the nerve causing the problem using nerve block injections before doing surgery, to make sure they're going to the right area. That's probably why a second opinion is good, and I'm not sure but I would think the VA should cover that. Someone else here may know the answer to that. You can often take all your MRI's and other medical records with you, so that if those tests have been done recently enough, a second opinion may just involve a consultation. If you have a teaching hospital within a reasonable driving distance that may be a good place to consider.

Anyway, I wish both of you the best of luck. Glad your husband is being started on the patches. Weaning from methadone can take time, and it may interfere with the absorption of other medications, so it may take awhile for new meds to be effective. However, since surgery is scheduled, I'd suggest your husband not suffer for any length of time with pain and just call his doctor back to see about adjustments if needed. It may be that you can adjust using the medication you have until the new meds come through the mail.

PaLady

hisfaithful1
Regular Member


Date Joined May 2010
Total Posts : 167
   Posted 6/25/2010 7:00 AM (GMT -7)   
PAlady,      Thanks so much for what sounds like very good advice. I have checked out the fibro site as well, and am so grateful for it. There are some very caring people there who have given me a nice welcome, just like here!
 
I do not really understand all this too well,  and I have such a hard time with remembering, uhhh just about anything. However I do remember the Neurosurgeon  explaining that there are a bunch of nerves which started out on a 4 lane freeway, and then got jammed into a 2 lane. He said he was going to open the freeway up, which will unpinch the pinched nerve.  Does this make sense?
 
Jim is out tuning alot of pianos today, he is on disability because of his back, but is still allowed to work part-time. He puts in full days 2 or 3 times a month, tuning alot that are in the same area. The draw back is, when he gets home, he is wiped out for 2 to 4 days with exhaustion. I will let him know what all you said, and hopefully he will see about getting a second opinion.    I've read reviews from others who have had this surgery, and most of them do not sound too encouraging. Trying to stay positive though.  Jim says,   If it will just fix the pinched nerve it will be worth it.  I'm praying it will not make his pain even worse, as it has w/ others.  I feel so bad for people who had such high hopes and then wound up with worse pain then before the surgery.
 
I would like to hear from anyone else here whose had a TLIF, and how it turned out for you in the long run. I would be really grateful.
 
Thanks again
 
Debbie

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/25/2010 11:56 AM (GMT -7)   
Debbie,
One other thing you can do is use the search tool on Healing Well and put in TLIF and see if there's anyone here who had that specific procedure. There are many of us who have had back surgery, however, but various procedures.

What level of the spine is the fusion going to be at? I had a double fusion, which means two levels, so I'm fused between L4-L5, and L5-S1, which means all the way between L4-S1. But the nerve pain down my right butt and right leg and into my feet continues. These nerves are so, so complicated. It is tough to understand all of this. Most of the time what the surgery is trying to fix is nerve pain, but by fixing the structures so they're not compressing the nerve anymore.

I don't know if I mentioned it earlier, but there is a lot of good information in the CP101 thread at the top of the page of posts. Lots of links to sites that can help you learn - most of the things that we've all had to learn from over time!

Another great site I used (one of my PM doctors recommended it a few years ago) is
www.spineuniverse.com. I think the Cleveland Clinic filters information there, but I found that it helps explain things in terms we can understand and pretty much everything about the spine one can think of is there.

Again, good luck! And as I said your husband is certainly willing to post.

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 6/25/2010 12:21 PM (GMT -7)   
Hi Debbie, I too would like to welcome you to Healing Well's CP forum. Very glad you found us but so sorry you have to be here. From the story you have given us you really have a full plate and no wonder you feel all stressed out. One thing we all here have in common is pain and totally understand how and what it does to a person and their families. It does not just strike the patient but everyone around them.
 
I see the others have jumped on and said hello and have given you some very good info. I am glad you checked out the Fibro forum, you will find those folks to be a wealth of information that will be usefull to you.
 
I have been on the Fentanyl patches before and a couple of things I want to point out to you is this. If your husband is outside in the heat and his body temp rises there is a very good chance he will have more than he should have of the pain medication released from his patch which will shorten the life of the patch and can send him into withdrawals. Even taking a hot bath or shower can do this. I was on the patches for awhile and it was during the summer months. I am an outdoors person so I was out in the heat. Well as my body temp went up more of the medication was released and I was on the 50's at the time and at first I did not know what was happening. By day three I was in withdrawals and it was horrible. My daughter was the one that picked up on what was happening to me, she use to work in a pharmacy. if he has trouble getting the patches to stick and stay on you can cntact the company and many offer something to put over the patch to keep it on. I used a product called TegaDerm which is like the clear adhesive they put over an IV site and it kept the patch dry. I do hope he can make the transition from Methadone to Fentanyl ok, some have had issues trying to switch. If he is having any trouble get a hold of the dr ASAP. They do make now a 12.5 mcg so there is a little bit to work with if he needs a small increase. I am really surprised he is able to do any work from what you have described.
 
I am sorry to hear he had trouble with Lyrica because the medications available for nerve pain work much better as a rule for the pain over any pain medication out there. For some reason pain meds just don't do the trick with that type of pain. That is awful that he is having such a wait to have surgery, good grief. But, I am with the others here, please get a second opinion even if you have to pay our of pocket for it. It would be good money well spent for some peace of mind knowing this is the route that needs to be taken. I don't know where you live but, I sure would be getting online and doing some checking and calling around for a consult with a good neurosurgeon. Most at best charge around $350 for a consult only. He can take his MRI films with him to the appt for the dr to review.
 
Good luck to the two of you and I hope you will keep us posted on how things are coming along.
 
 
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2283
   Posted 6/25/2010 1:47 PM (GMT -7)   
Have you tried traction?

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/25/2010 8:24 PM (GMT -7)   
Debbie,

Welcome to the board... I'm sorry that you and your husband are going through so much... I admire you reaching out to try to help your husband; it's very hard to see a loved one suffering....

I've been on just about every medication out there, at HUGE doses (I have a wickedly high tolerance to most meds); anyway, fentanyl is the one medication that touches my pain the very best. So, I'm praying so much that it helps your husband. Depending on what doses of meds he has been on, the 25 mcgs is a pretty "low" dose (although, that is where they start, most of the time, w/ the patches). Anyway, he may need to go up on the meds, so please encourage him to hang in there w/ it and see. Also, sometimes the patch doesn't last the full 72 hours. For some people, they need to change it at the 48 hour mark. Just things to keep in mind. It sounds like it takes awhile for the VA to act (on dosage increases and so forth).... but, if the patch seems to be working - but just not enough - push on to get what he needs.

My husband, too, learned so much about the issues I have.... I learned early on w/ this that I needed to be my own best advocate (or, if I'm too sick, then my husband takes over). We've run into unbelievable road blocks over the last 7+ years, and there are times where you just need to know when to push on, or when to not accept "no" from someone. It's amazing how many times I've gotten things to happen that I was initially told "never" about. So, I just encourage you both to keep reaching out, learn as much as you can - and keep pushing for your needs.

(I wrote this before I read the responses others wrote.... so I see some already mentioned about the patches... and, I agree, the switch from methadone to fentanyl can take some adjustments.. so hang in there ) :) Anyway, I don't have anything to add re: surgery and all as I've not dealt w/ those issues... but glad that others here can give you good advice.

You seem like a really caring person, Debbie - and I hope to get to know you (and your husband) better. Please continue to post, and keep us posted on things. Take good care - both of you!

--Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 6/25/2010 11:45 PM (GMT -7)   
Debbie
I to would like to welcome you to the forum and also your husband! I am retired military and have 60% disability through the VA. I do get some of my meds through the VA but I do not use the VA for much of anything else because of the distance that they are from where I live. It can take so time to get things done through the VA so you do have to be patient! I have not had surgery on my lower back But I have had several disk fusions done in my neck with the first one done at C-6/7 in 1985 while I was in the military in Alaska, but the surgery was done at the civilian hospital in Anchorage. The second disk fusion was at C-5/6 and was done just this last September at a civilian hospital. I can tell you that the reason I had this last ACDF Anterior Cervical Diskectomy and Fusion, I was having very severe left arm pain, caused by nerve root impingement at C-5/6, anyway I had the surgery in the morning and when I woke up in the afternoon, my arm pain was completely gone. It did not take away the pain in my head and neck, because that is caused by other disks higher up but the severe arm pain I was experiencing was fixed completely! With all surgeries involving the nerves of the spine, everyone is different, and what works for one person might not work for another. But if the pain is caused by pressure or impingement of the spinal nerve roots, to relieve the pain, you just about always have to remove what is causing the pressure or what is causing the impingement of the nerve root, whether it be a herniated disk or bone spur, or stenosis, (narrowing of the opening of the bone from which the nerve root passes through.) By all means do get a second oppinion if you can, if your VA hospital is large, they might have other neurosurgeons there that you might be able to consult with! I do wish you and your husband well and again I Welcome you to our forum! Encourage your husband to come and post as well! I can't begin to tell you how great the folks at this forum are! I honestly don't think you will find a more caring and compassionate, supportive, group of people anywhere on the internet, than what we have right here, at this Healing Well Chronic Pain Forum! I do hope that YOU and your Husband come here often and become active members of our family here!

I wish you both well!

White Beard

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/26/2010 2:32 PM (GMT -7)   
I wanted to welcome you and your husband to HW. Like WhiteBeard said this is a great group of wonderful people who are very supportive and caring. We are all in the same boat, ie. suffering with chronic pain for one reason or another.
It seems that you have got a lot of information from the previous members. I am not familiar with this type of surgery.
And yes i will pray for you as I, too, have my faith that keeps me going each day. I cannot get to church yet so I have a lady from my church that comes each Tuesday to bring me communion and support me. She has helped me in many ways.
Take it one day at a time Debbie, you and your husband together!!
 
Hugs
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           

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